Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Newly Diagnosed, Not Optimistic About New Lifestyle


tonalynn

Recommended Posts

tonalynn Explorer

Hi all,

 

I was just diagnosed on Monday with celiac disease. I was worried I'd have to go gluten-free because of my Hashimoto's and my naturopathic doc mentioned that might be the way to go. Now it looks like I have no choice. I have been a bread/carb/pasta/baked good junkie my whole life so I'm looking at a huge (and rather overwhelming) lifestyle change.

 

My testing came with an unhappy surprise as well - apparently I'm allergic to almonds. I LOVE almonds, so this was like a punch in the gut. No bread AND no almonds?

 

I've cleaned out my pantry, am reading all sorts of information on celiac disease but truth be told, I'm not very optimistic this is going to help me at all. Why?

 

I think I have the silent version - I have had little to no energy since I was 14 and came down with a bad case of mono (I'm 43 now). A day hasn't gone by where I haven't wanted, needed and planned for a multi-hour nap. I have insomnia and often am exhausted but can't sleep (like now). My skin has always been bad, so has my depression. I'm lactose intolerant, and relieved a lot of my gut issues by making sure I have Lactaid with me at all times. Both my parent's have digestive issues, and any indigestion or loose stools I've had didn't seem out of the ordinary.

 

Other than that, I don't have any of the symptoms I read about other celiac's having. Just fatigue, depression and feeling sleepy after eating carbs (but I know a lot of people like that who don't have celiac).

 

Doctor's told me when I was diagnosed with Hashimoto's a dozen years ago I would feel better after starting to take thyroid medicine. I didn't and still don't.

 

They upped the dosage, no change in how I feel.

 

Add vitamin D, they said. No change.

 

Your hormones are out of whack. You should try Bio-Identical Hormone Therapy. You'll feel great, lose weight, your skin will clear up and you'll have the sex drive of a teenager! I've been on BIHT for 14 months, don't feel any different than the day I started it. I haven't lost, but gained weight, skin is no different, and what sex drive? One thing that has changed on the BIHT is my TSH has doubled in a year - it's now around 7.5 and it's supposed to be below 3!

 

Nothing I've tried in the last 30 years has made a significant difference for a long period of time. I did lose 35 pounds when I cut out white flour, and kept it off for 5 years. Other than that, it's just been status quo.

 

I'm sure it's clear why I'm not optimistic that going gluten and almond free is going to make me feel any better. But I'm doing it just the same. I had NO allergy symptoms after eating almonds, never felt any different and no reactions like I have to things I KNOW I'm allergic to.  I don't like walnuts, why can't I be allergic to those? ;-)

 

Anyone else out there that's asymptomatic, feels like I do, has tried everything else and going gluten free was what changed things for you? After everything I've tried, I have a sinking feeling that I'm going to give away a bunch of perfectly good food I can't eat anymore, spend a lot of time, money and effort going gluten free only to feel exactly the same as I did on the day I was diagnosed.

 

I hear over and over: gluten free is the way to be! You'll feel so much better! You're doing the right thing for your body. It's not as hard as you think! But I'm still doubtful.

 

Can anyone relate? Please tell me I'm giving up real sourdough bread from SF, chocolate covered almonds, my favorite frozen Italian meatballs from Costco and Stacy's pita chips for something other than the hype. Because right now I can't sleep because I keep thinking of all the things I can't have anymore. :-(

 

Thanks for reading my long winded vent!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Gluten withdrawl is not fun.

 

However, I know your pain to a degree. I used to love tomatos (mainly when they were cooked). Found out i was allergic to them and i had to cut them out completely. It was not fun.

 

I was a such a bread and pasta fan that it hit me hard. None of the gluten-free breads tasted right to me. Same with the pasta.

 

I do not do regular bread anymore. If i make a samwhich its on a corn tortilla. My pasta is the ancient harvest quinoa pasta. Both of those taste so good to me now.

 

You'll get to the point where it won't matter anymore because you will find new favorites.

Link to comment
Share on other sites
Pegleg84 Collaborator

It sounds like you've gone through years of attempted remedies (drugs, diets, etc) that haven't worked, and probably the reason is because gluten was the culprit all along. For silent Celiac, I think it's even more important to be as strictly gluten free as possible, since if you get into something, you might not notice it while it's still doing damage anyway.

 

Yes, it's tough switching, and getting rid of foods you love (ask friends or family if they can take any gluteny food off your hands before chucking it), but find a few naturally gluten-free things you like to eat, and stick to those for a while. Whole, unprocessed foods are recommended at first while you're healing.

 

But I bet within a few weeks you're going to start noticing a difference. Even though you don't have stomach issues, the fatigue, depression, etc are all symptoms. As you start to heal and absorb nutrience, it'll start to get better.

I understand why you're skeptical, and gluten-free is not a magic bullet; it's going to take a while to heal, but stick to it and you will.

 

Good luck!

Link to comment
Share on other sites
Gemini Experienced

tonalynn...I didn't even get through your post before I decided to reply.  I have Celiac and Hashi's myself and from your list of symptoms, I would say you do not have the silent type and all you have listed are either thyroid issues, Celiac issues or both.  The root cause of all that you list is Celiac and you have probably had it for years.  This is what caused all the inflammation with your thyroid and gave you thyroid disease.  When you are eating foods that you are intolerant of and start on the long road to inflammation, it invades other organs until you stop eating gluten.  There is no need to think this will not help or you will be resigned to eating foods you do not like......nonsense, my dear.  I can assure you that all your favorite foods, carb-wise, can be made gluten-free and they taste every bit as good as that gluten crap that is making you sick.  I am not lying to you and with time, you will see that this is true!  There has never been a better time to be gluten free.

 

Like you, I went from doctor to doctor for YEARS, looking for the answers to my many symptoms and health problems.  It wasn't until the Celiac was diagnosed that I got better.  I will tell you why your thyroid meds don't make you feel better.  You aren't absorbing them properly, due to your damaged gut.  I was on very high doses of thyroid meds for a long time before the Celiac diagnosis was made and I still felt horrible. I kept having to up my dose, with so-so results.  Once I went gluten-free, after about 4 years, I went seriously hyper because I was now absorbing food and meds much better and the dose was too high.  I went from 150 mcg. per day and now am down to 113 mcg per day and am still tinkering with the dose to see how low I can go and be balanced. So, please believe me that this is your answer and you WILL FEEL BETTER but it is going to take some time for healing to occur so be patient.  You are not well and run down so hope is hard at the moment.  With a TSH of 7.5, I get how bad you feel....really!  That will change but you must be strictly gluten-free.

 

Here are some links to my favorite breads.  You may want to wait a few months to try them because right now, your head is wrapped around gluten versions and you might not like the gluten-free versions but I would be surprised if you didn't like these.  They are some of the best that is out there and are the favorites of many Celiacs.

 

Open Original Shared Link

 

Open Original Shared Link

 

A few things to think about.......most doctors know jack squat about celiac and will try and throw pills at you to band-aid the situation.  Seratonin is made in the gut and that is the feel good brain chemical.  If your gut is damaged, seratonin levels will be low and you will feel depressed.  Thyroid disease also contributes to depression.  I am against the use of anti-depressants in newly diagnosed Celiac's because, over time, this should clear as your gut heals and your body gets back on track.  Don't let them mess with you.

 

You have no choice about being gluten free.  You are a diagnosed Celiac and if you continue to eat gluten, even small amounts, you may go on to develop other autoimmune diseases and your life will be worse off than you are now.  I was a total mess at diagnosis.....weighed 94 pounds and was very close to needing a feeding tube.  No exaggeration on that one.  This is your future if you don't heed the warning.  Your health is in your hands and I promise you things will get better. I won't lie to you......healing is real.

 

There is a learning curve and you need to educate yourself about this. You are lactose intolerant because of Celiac. The enzyme which digests lactose is produced in the villi and when they become damaged, you cannot digest milk.  Some people get that back once they heal, others do not.  I am dairy light still, after 8 years but I can tolerate some cheeses and small doses of dairy. 

 

Read the Newbie thread on how to get started and tell us what foods you are missing so we can help you find great substitutes that will make your brain happy.  We are here to help so relax!  You will be a different person in a year from now and it gets better with each passing year.  I have 4 autoimmune diseases because I went so long as an undiagnosed Celiac and all 4 are much better now due to the gluten-free diet. MUCH BETTER.  I have not developed any more and it's been 8 years for me.  Think of that when you contemplate eating gluten!

 

Hang in there and check in often so we can be of assistance!   :)   I understand exactly what you are going through.

Link to comment
Share on other sites
kareng Grand Master

What Gemini said!  I don't need to repeat all that good advice.

 

here is the "Newbie" thread with lots of miscellaneous stuff.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

Look at/join in on the What's for dinner thread to get ideas of what we eat. 

 

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/page-460#entry890741

Link to comment
Share on other sites
tonalynn Explorer

Thank you all for the great responses! Please keep them coming!

 

I have the gene from both parents for celiac, so I was probably born with it. Both sides also have thyroid issues, my dad had Grave's disease, so I made the obvious assumption I got that from them, but no one ever mentoned celiac in my family before. I thought I might have the silent type because I don't remember a time when I didn't feel the way I do now, even as a child. Part of me thinks the way I feel is normal. Isn't that sad?

 

The doctor that diagnosed me is a naturopath. She did a barrage of tests to find out everything wrong with me, and that's how we found the celiac. Her instructions are to go gluten free for 6 weeks, no almonds as well, and 3 natural suppliments (digestive enzyme, uristatin and pectin enzyme) to heal my gut. I see her in 6 weeks to see how I'm doing.

 

I am committing to gluten free and even though I'm not happy about it, I'm going to give it 100%. I didn't get a chance to say goodbye to my gluten carbs properly, so I'm having a "Goodbye to Gluten" dinner tomorrow night. My last regular pizza and beer (I'll miss you both!) and I'm bringing all my gluten food with me so my friends can take what they want before I donate the rest. I'm kinda hoping I won't feel so hot on Sunday, so I can really see how gluten makes me feel, now that I'm paying attention! It will be easier to give up.

 

Gemini, I read your response twice, and you sound like you've been where I am. I hope this is the thing that works for me! It sounds like it's worked for you and so many others when nothing else did. I've been on anti-depressants for over 10 years, but again, didn't think anything of it because it runs on both sides of my family and my mother tells me I wasn't a very happy kid. I'm elated to know there's a good chance I can ditch the anti-depressants once my gut heals and my celiac is under control!

 

Thank goodness gluten free foods are on the rise! I live in Colorado, and we have very health concious communities here (and some that are a bit too extreme for my tastes). Is it ok if I buy gluten free bread and pasta? Rudi's bread is actually not that bad, it makes a good substitute for gluten bread. The more substitutions I can make, the easier the transition will be. My family and friends are super supportive so I've got help when I need it. And this board is fantastic!

 

I will read the newbie thread and plan on browsing the recipes. I'm a substitution girl rather than an elimination altogether type. Is there a substitution thread somewhere on here? My naturopath encouraged me to read Wheat Belly, so I have a copy, and I'm also reading The Complete Idiot's Guide to Gluten-Free Eating.

 

Again, thank you for the encouraging words and resources. I'm hoping to find a celiac support or social group close by. It helps to know others have been through this, or are going through it at the same time, and it can be done. Thank you, and I look forward to hearing more of your stories!

Link to comment
Share on other sites
famgrl Newbie

I am so glad I came across this thread! My mood is down in the dumps and I didn't care about my celiac or following the diet in the past. I have a motivation now that I want to get pregnant. I worry sometimes about how much damage I did to my body. Part of me not wanting kids earlier was that I didn't want to bring a life to this world because I won't be able to take care of it due to low energy and depressed mood. But this gives me a lot of hope. Hopefully my mood and energy goes up by giving up gluten. I am also planning to stop dairy as per suggestions I received from the forum. Hopefully this helps me heal! 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gemini Experienced

Of course you can buy gluten free pasta and bread!  As long as you feel OK after eating it, no problemo.  Some people may have a problem in the very beginning with carbs due to gut damage and other factors but some don't.  I was able to eat gluten-free bread right off the bat and it's a good thing because I was bone thin and needed to gain. You know, gluten-free bread makes a mean French toast!   ;)   It does help in the beginning to keep you from feeling deprived.

 

All those anti-depressants probably weren't being absorbed correctly so that's why they didn't seem to help.  It's a vicious cycle. I also have a double Celiac gene and I swear both parents have Celiac and or gluten intolerance but they deny it.  Those with a double gene supposedly have a more severe form of Celiac and from an earlier age.  Hindsight is 20/20!

 

Enjoy your party and I can't say that I blame you.  It will help put gluten to rest if you say a proper good-bye.  Even if you don't feel sick from a GI point of view, you may get an exacerbation of your symptoms and that should be a clue that gluten is really a problem. Work on those thyroid numbers because you won't feel better until that TSH is lowered.  I remember that crap all too well.

 

I also wanted to add that when you told us your family history, you all sound like screaming Celiac's to me!  Ha....the club you never wanted to join.

The club members are awesome people so you are in good company.   :D

Link to comment
Share on other sites
Salax Contributor

What Gemini said  :D  and alot of gluten free foods don't have nuts (you have to read labels of course), but the popular Udi's I believe is nut free (I cant eat it because of corn) but I think Rudi's is nut free too. So it's really gonna be ok. I sure miss cheese and corn, probably as much as you miss almonds....but then I think oh, man I feel good. Why would I want to eat that again. Then I usually hunt down chocolate. :P

 

Try to look at this as a new way to feeling better, not "everything else failed, so this will too". I also have Hashi's and Celiac. I am doing better then I have in years, yes it's a long journey, yea at first it's overwheming and you will think it sucks. But you can't feel better until you try it. B)

Link to comment
Share on other sites
LauraTX Rising Star

Tonalyn, I know it sounds cliche but it does get better!  I was so freaking depressed when I had to go gluten free.  I donated my pantry items to the food bank and gave my frozen items to a neighbor with a bunch of kids to feed.  

 

A few weeks after my diagnosis, I had long-before promised to go pick up and deliver delicious barbecue to my spouses workplace for a party they were having.  I was running late that day and had yet to eat, and I had to sit hungrily waiting in the restaurant for 20 minutes smelling the aroma of food I could not eat.  They didn't have any safe food for me, the lady at the counter felt bad and gave me a free soda though.  I made it through that 20 minutes, but as soon as I got out the door I started bawling.  I called my husband and told him to meet me in the back corner of their parking lot by himself and when I got there I was like take the food, yes I know I am crying, I just want to leave before someone sees me, bye.  Later my husband said he felt so bad for me he shed a tear, too, and he is not an emotional guy, haha.

 

I am also a "silent celiac," I don't get the breakthrough symptoms upon accidental gluten exposure, but I have immune and autoimmune problems and they are all intertwined so I stay gluten free, knowing it will help me not feel like crap.  This forum was a godsend to me, and just like any new role you have to play, "gluten police" gets a little easier as time goes on, and you get to know your way around things and gain confidence.

Link to comment
Share on other sites
1desperateladysaved Proficient

Thank you all for the great responses! Please keep them coming!

 

I have the gene from both parents for celiac, so I was probably born with it. Both sides also have thyroid issues, my dad had Grave's disease, so I made the obvious assumption I got that from them, but no one ever mentoned celiac in my family before. I thought I might have the silent type because I don't remember a time when I didn't feel the way I do now, even as a child. Part of me thinks the way I feel is normal. Isn't that sad?

 

The doctor that diagnosed me is a naturopath. She did a barrage of tests to find out everything wrong with me, and that's how we found the celiac. Her instructions are to go gluten free for 6 weeks, no almonds as well, and 3 natural suppliments (digestive enzyme, uristatin and pectin enzyme) to heal my gut. I see her in 6 weeks to see how I'm doing.

 

I am committing to gluten free and even though I'm not happy about it, I'm going to give it 100%. I didn't get a chance to say goodbye to my gluten carbs properly, so I'm having a "Goodbye to Gluten" dinner tomorrow night. My last regular pizza and beer (I'll miss you both!) and I'm bringing all my gluten food with me so my friends can take what they want before I donate the rest. I'm kinda hoping I won't feel so hot on Sunday, so I can really see how gluten makes me feel, now that I'm paying attention! It will be easier to give up.

 

Gemini, I read your response twice, and you sound like you've been where I am. I hope this is the thing that works for me! It sounds like it's worked for you and so many others when nothing else did. I've been on anti-depressants for over 10 years, but again, didn't think anything of it because it runs on both sides of my family and my mother tells me I wasn't a very happy kid. I'm elated to know there's a good chance I can ditch the anti-depressants once my gut heals and my celiac is under control!

 

Thank goodness gluten free foods are on the rise! I live in Colorado, and we have very health concious communities here (and some that are a bit too extreme for my tastes). Is it ok if I buy gluten free bread and pasta? Rudi's bread is actually not that bad, it makes a good substitute for gluten bread. The more substitutions I can make, the easier the transition will be. My family and friends are super supportive so I've got help when I need it. And this board is fantastic!

 

I will read the newbie thread and plan on browsing the recipes. I'm a substitution girl rather than an elimination altogether type. Is there a substitution thread somewhere on here? My naturopath encouraged me to read Wheat Belly, so I have a copy, and I'm also reading The Complete Idiot's Guide to Gluten-Free Eating.

 

Again, thank you for the encouraging words and resources. I'm hoping to find a celiac support or social group close by. It helps to know others have been through this, or are going through it at the same time, and it can be done. Thank you, and I look forward to hearing more of your stories!

 

First the bad news that you perhaps can relate to.  I have two copies of DQ2 and two copies of DQ8 genes.  I lost the enamel off my teeth at 17.  I spent 30 years with mysterious major bloating in the tummy.  I spent most of it with major fatigue and brain fog.  Each diet improvement, or supplement change seemed to really help for a while, but I kept taking these dives to nowhere!  I tried all of the natural means I found to try to climb the mountains of energetic living again.  Then, I found out about my having celiac.  It surprised me to the max.  I felt disappointed to limit my diet, AGAIN!

 

But now, I am better.  I am gluten free 18 + months.  The fatigue is gone and the foggy mind is gone!  Now, instead of complaining that my family is going to a restaurant that I can't go to. I sit in the car, eat my dinner, and thank God and my husband that He allows me to stay in the car.  For now, that is what allows healing.  I sure don't want to ruin this new life I have.

 

I am using pecan flour.  It has a nicer flavor than walnut and some of my children like it too.  I avoided almonds for a few months, but have added them back in.  I hope you will be allowed that in the future.  I use coconut milk instead of dairy.  Nut milk or rice milk work for others.

 

I am a testimony that one that has had symptoms for 30 years from celiac can be delivered.  I hope one day you will be telling us a similar story.  I too use natural forms of treatment and it has worked for me.

 

Get well, and don't mind yourself struggling through for a while,

 

D

Link to comment
Share on other sites
w8in4dave Community Regular

I think you will feel better if you give it a chance! It is hard specially at first! But you can do it! Your already starting! I think they were right up above , you have never felt better because Gluten was the problem all along" It hasn't been that long for me and I am feeling better. So much better I went to see my Dr. And got all emotional over it! Do I still have problems? Yes! With Autoimmune you will always have something. But your body will start to heal from the damage and you will feel better! good luck.. Let us know how much better you feel in a few days! :) 

Link to comment
Share on other sites
ItchyAbby Enthusiast

Everyone here has already given such good advice that I am not really going to add any more. I will say welcome to the forum! This place is full of so many good people - you will come to find the support here an essential part of the healing process.

 

But what I wanted to give you is a recipe for my favorite scones. I, too, am/was a carb and baked goods junkie. (The cravings are actually significantly diminished since I've been gluten free. Weird to think that my body voraciously craved that which was not good for me) But this scone recipe has been delightful - it can enjoy a tasty treat with my tea, but it's nutrient dense and very satisfying (and made with cashews, not almonds!): Open Original Shared Link

 

Pecans are awesome as are hazelnuts. And I ahve heard good tings about chestnut flour, though I have yet to try it.

 

It's ok to be feeling low about this new life you are entering. It's no small thing to completely overhaul your way of relating to food. Someone here told me that I was in mourning/grieving when I first started posting here and it was true. I grieved and got pissed at the world for a while. And then one day, without me even noticing it, the way I had to eat just became "normal". So allow yourself to grieve and cry and get mad or just feel downright hopeless - come here, and talk to us when you do. You will get through this and adjust to your new normal, too.

Link to comment
Share on other sites
GF Lover Rising Star

Welcome to the Forum Tonalynn,  As you have read, you most likely will start to feel better than you have in quite some time.  When your having a hard day, come here and cry, when you are mad, come here and rant.  AND, when you start feeling better, come here and gloat.  We will help you every step of the way.

 

Have fun at your Party!

 

Colleen

Link to comment
Share on other sites
kareng Grand Master

 

Now, instead of complaining that my family is going to a restaurant that I can't go to. I sit in the car, eat my dinner, and thank God and my husband that He allows me to stay in the car. 

 

 

Tonalyn - so as not to depress you further - There is no reason to sit in the car.  As you go along, you will learn where you can eat safely and ways to deal with it if you can't.  Many of us eat first or bring some food when going to restaurants.   We go in and enjoy the company. There is no legitimate reason not to.

Link to comment
Share on other sites
notme Experienced

wine, chocolate, lobster <all gluten free :)  what gem said about your villi - once they get healed up, you may find yourself not lactose intolerant anymore, so, maybe ice cream ??  i *heart* rudi's bread - they have improved it over the past few months - and tinkyada pasta is my favorite.  it's trial and error, but you'll get more comfortable with it as time goes by.  we do all sorts of traveling (do yourself a favor and skip the fast food restaurants - very likely you will not get a safe meal there, no matter what the kid at the counter says lolz) 

 

i think you will find that other, "unrelated" problems will be cleared up - celiac is systemic - so, it's related to your whole body, from your bones & muscles to your nerves.  once it starts getting the right 'fuel', your body will stop fighting itself and begin to absorb necessary nutrients.  you will be less fatigued :)  i remember the first day i did TWO THINGS IN ONE DAY without coming home and collapsing - it was a great feeling and i forgot that you could even DO that lolz  :D

 

anyways, everything gem said :)  i am late to this pity party lolz - but you are in good company here.  even doctors can't give you the awesome advice you can get on this forum.  it pretty much saved my sanity - we know how you feel.  so, grieve for your food - we all did it and it's normal.  there's a light at the end of the tunnel, trust me!

Link to comment
Share on other sites
IrishHeart Veteran

& that light at the end of the tunnel? is NOT an oncoming train, I promise you! ;)

 

Hi Tonalynn,

 

I can only echo what GEMINI has said because her story--and yours-- is very much like mine. I was dying from long UnDxed celiac disease

and now, I am not!  :) I was a slow healer, but Gemini, Karen and so many others told me what I am going to tell you now:

Healing takes time. Be patient. Explore all the delicious options available to you.

 

All of the other autoimmune disorders I acquired are under control and I once took 12 medications when doctors just "symptom-managed" me

and I never felt well at all. Years and years and years. Multiple miscarriages, thyroid, liver, heart, joints/bones, muscle, nerves--all affected.

Depression/anxiety resulted from malabsorption,anemia, vitamin and mineral 

deficiencies--from celiac-and all those drugs they gave me just made it all worse.

 

 Now, I take no meds at all. None. zip. Nada. :)

 Why? because removing the gluten helped me heal.

yes, it takes time, but it's worth it to be well for the first time in my life.

 

You will have pizza & beer again! Just G F.

 

A celiac diagnosis is not the end of the world. It's the beginning of your new, long, healthy and happy life.

And I eat out often (I just spent a week in NYC in August) and I travel and I choose carefully where I dine and I assure you,  I am fine.

Let's get you healing first before we start encouraging eating out all over the place.

 

Forget "Wheat Belly". :huh:  That guy says "celiac is not a real disease". Boo on him.

 

Please, I encourage you to read: 

 

Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler

 

and Celiac Disease: A Hidden Epidemic by Dr. Peter Green.

 

Get advice about celiac from  C D specialists and from fellow celiacs and

Celiac dieticians like Tricia Thompson and Shelley Case. (just google)

 

The Univ. of Chicago Celiac Center Has tons of great info.

 

and check out the Newbie 101 thread. I hear it's full of pretty good info and suggestions..

 

Welcome to your new life. We're here to help.

Link to comment
Share on other sites
kareng Grand Master

 

 

You will have pizza & beer again! Just G F.

 

 

 

 

 

 

 

 

Yep!  I went out for beer and pizza last night!  Yum!  Going to Pf Changs tonight! 

Link to comment
Share on other sites
IrishHeart Veteran

Yep!  I went out for beer and pizza last night!  Yum! 

 

Got  some New Planet right here

 

smileys-drinking-beer.gif

 

(that's Karen and me)

 

 

 

 

 

and the dough is rising.

 

 

pizza-chef-smiley-emoticon.gif

 

 

Pizza night in our house. Life is good.

Link to comment
Share on other sites
notme Experienced

yes, i'm watching tennessee lose :( and having a bard's  :)  my son just delivered a case to the back porch.  he's ok, sometimes :D (i can only get it in knoxville, so he picks me some up from time to time on his way home from work - sure beats redbridge lolz)

Link to comment
Share on other sites
IrishHeart Veteran

yes, i'm watching tennessee lose :( and having a bard's  :)  my son just delivered a case to the back porch.  he's ok, sometimes :D (i can only get it in knoxville, so he picks me some up from time to time on his way home from work - sure beats redbridge lolz)

oh honey, everything beats Redbridge. Even water.  :lol:

Link to comment
Share on other sites
Mesadora Newbie

Tonalyn

I to am from colorado. I also have kids and I never even got the goodbye pizza or beer. I understand your qualms. I am suffering from them as we speak. I just don't eat anymore. I however gained serious amounts of weight. My liver was over 800 and high is 35. My vitamin D was so deficient but I was tan as tan could be...I am 2 months into gluten free and today I became so discouraged.... I just wanted something normal. I cannot figure it out and my family isn't following the diet with me so I am just watching everyone eat. My problem persists from being southern. We fry and bread everything. Lol. But currently I stopped cooking completely. I have found that red robin rocks. They have gluten free bread and offer to wrap any sandwich or burger in a lettuce wrap. I just hate thinking u r outside eating. Ugh. I understand because I am not eatjnf at all since I don't know what to eat. However if I have to go to red robin everyday to just get something that isn't contaminated then I will and hopefully it isn't contaminated since my scores are still elevated to a 9. However they have dropped in 2 months from 97. So that's encouraging. Please if you find out any great places to eat or breads to make. Send then along. I would love to have a normal meal again soon.

Thanks

Anne

Link to comment
Share on other sites
Rucko Apprentice

Hope all the advice is giving you some good support!  

 

I too remember that feeling of having my world turned upside down as all sorts of foods were now off limits.  The cravings do go away though, and when you think of what you used to eat, it will just be a memory like any other.  There is always something else you can eat and you need not feel deprived.

 

You might not be aware of this, but there is also a lot of information out there about the Paleo Lifestyle, kind of the next step of eating gluten free, where folks try to eat more like so called cavemen did.  Authors like Dr. Loren Cordain, Robb Wolf, William Davis, Nora Gedgaudas, and now best seller Dr. David Perlmutter with his latest book 'Grain Brain' have a wealth of information about the dangers of grains and other foods that are new to the human species.  Might be worth checking some of their books out, if only to feel better about leaving some of your favorite foods behind.

 

Best of luck.

Link to comment
Share on other sites
cyclinglady Grand Master

Tonalyn

I to am from colorado. I also have kids and I never even got the goodbye pizza or beer. I understand your qualms. I am suffering from them as we speak. I just don't eat anymore. I however gained serious amounts of weight. My liver was over 800 and high is 35. My vitamin D was so deficient but I was tan as tan could be...I am 2 months into gluten free and today I became so discouraged.... I just wanted something normal. I cannot figure it out and my family isn't following the diet with me so I am just watching everyone eat. My problem persists from being southern. We fry and bread everything. Lol. But currently I stopped cooking completely. I have found that red robin rocks. They have gluten free bread and offer to wrap any sandwich or burger in a lettuce wrap. I just hate thinking u r outside eating. Ugh. I understand because I am not eatjnf at all since I don't know what to eat. However if I have to go to red robin everyday to just get something that isn't contaminated then I will and hopefully it isn't contaminated since my scores are still elevated to a 9. However they have dropped in 2 months from 97. So that's encouraging. Please if you find out any great places to eat or breads to make. Send then along. I would love to have a normal meal again soon.

Thanks

Anne

Anne -- 

 

You can still cook "southern" and be gluten free.  Try cooking just simple foods like grilling or roasting meat and serving it with rice/potatoes and veggies.  Make stews or chili and serve with salad.  gluten-free cornbread is pretty darn good!  Serve spaghetti, but make a batch of gluten-free pasta just for you (just use a dedicated strainer).   Slowly wean your family into at least a partial gluten-free lifestyle -- especially at dinnertime.  

 

I bake lots of cupcakes, cookies and cobblers that are gluten-free and my gluten-eating daughter begs for them over any store-bought gluten dessert! I also fry gluten-free chicken in my reconditioned family cast iron skillet (bake cornbread in a skillet too!)

 

Please don't rely on gluten-free restaurants only for a majority of your meals.  They make mistakes -- it happens.  

 

We've been gluten-free for dinner for 12 years (hubby's gluten-free).  When I was diagnosed, the whole house went gluten-free.  My daughter only gets packaged gluten treats/meals to take to school.  No crumbs allowed in our house!

 

Please read the newbie thread.  It has lots of tips to help make going gluten-free easier.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Good luck!  

Link to comment
Share on other sites
Gemini Experienced

Anne.......I know cyclinglady gave you stellar advice but I have to say something here......you need to start educating yourself on Celiac if you are to lead a normal life.  I have to admit I was a bit offended at the notion that you just want something normal so your response was to not eat.   :blink:   Celiac's are normal and we eat normally.....we just eat much healthier than most people and eating healthy is NORMAL.  It's the rest of the country who aren't eating normally...they are eating processed crap that is making them unhealthy.  

 

I know you are in shock and any lifestyle change takes a bit for that shock to wear off but you need to start reading books on Celiac so you'll know all you need to know about living normally with it.  You also need to take control of your household and if that means there is no gluten allowed in the house, so be it.  Your family can eat gluten till they burst outside the home.  If you allow gluten food in the home, then you need to set up rules for them to follow so you will get better and stay well.  I could say more but am cutting you some slack here because you are a newbie but you will never be in a good place with this if your attitude stays the way it is.  Take control of the situation and things will improve dramatically.

 

You also need to stop eating out right now and learn to cook nutritious gluten-free meals.  It is still too early in the healing process for you to eat out.  This is so important for you to do.  Colorado is a super state for gluten-free....I have been there and I was impressed with the knowledge.  You live in one of the healthiest states in the country so will have plenty of support.

 

I wish you well and hope your adjustment goes more smoothly but it is totally up to you to make that happen.  We can help you find alternatives for your favorite foods too so just ask!  Be well......

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...